Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Which Tests Should Be Done?

peaches102984

Recommended Posts

peaches102984 Rookie
peaches102984
Posted

Hello,

I have posted a few times but not many. I have known about celiac disease since Jan 07. Its been a whirly ride the last 2 years or so....my 3 year old daughter has a doc. appt. on 10/24 my husband has one on 10/31. I am posting on here because I want to go to these appts well prepared. I am tired of going to the doc. and them being pushy because they are the doc. and they know alls well sorta speak. The last GI appt that my husband had the doc wanted to do both an endo. and colonoscopy. He had a colonoscopy 2 years ago and he doesn't want to go through another. He told the doc. this and he pretty much said you can take it or leave it. So my husband needless to say never returned to his office. My daughter on the other hand has never been seen for any problems other than normal check ups. Her appt. is a normal check up but I want her tested as well. I don't know much about the childs side of this disease. I march she started showing strange symptoms. Throwing up and irritability (alot of irritability from both!) 3 times she has thrown up this year. I know some of the tests but I don't know all of them... I have INS. from my job so I may as well use it! I know about the endo....and just thinking of my husband getting that test makes butterflies in my tummy because I feel thats the answer! But my daughter.....what tests are good enough for a 3 year old and my husband is 24. He don't work because of this and we are on and off this diet because of money issues right now....I always say if we can get you gluten free for real that you can go work and we can afford this diet without any stuggles! But it seems so far away! Anyone here can tell me what I need? Also I live in Austin, TX anything that is helpful to my area also....then next year we are moving to Atlanta, GA. Hope someone has some friendly advice.

Casey :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


aeshlea Apprentice
aeshlea
Posted

Hi Casey,

I can't believe I am posting a reply to some else's question as I am VERY new to this..haha....but I wanted to see if you had heard of enterolab? Its all over this forum, and I dont want to assume you have heard of it, but if you haven't you should check them out. My doctors didnt know what was going on with me, and so I followed my intution and took my health into my own hands. I discoverd www.enterolab.com and they do all these great tests...and they can do the right tests for your child too. The tests are relativley affordable, depending on which one you choose. And they offer insurance codes in case your insurance covers for it. I dont know how much it costs to go to the doctor for these kind of tests, but I imagine the ones on the website are comparable...and possibly much less invasive. No blood work, just stool samples and mouth swabs. They worked for me when others didnt. Good luck to you.

happygirl Collaborator
happygirl
Posted

Enterolab can't diagnose Celiac, though.

The traditional bloodwork, which since you have insurance through your job, will likely be covered:

(taken from Columbia University's Celiac Disease Center: Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

aeshlea Apprentice
aeshlea
Posted
Enterolab can't diagnose Celiac, though.

The traditional bloodwork, which since you have insurance through your job, will likely be covered:

(taken from Columbia University's Celiac Disease Center: Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Really? I guess I thought they could diagnose it, but I am new to all of this so its good to get the clarity. They do all the tests you listed above (although I am not so sure about the anti-endomysial antibodies (EMA) IgA) but it is not through blood work, its is through the stool work that I thought was actually more accurate..so I guess I am confused now. Can you only be 'diagnosed' through blood work then? What am I missing here?

happygirl Collaborator
happygirl
Posted

The "official" way to diagnose is through bloodtest and biopsy, and then the response to the diet.

Enterolab themselves say that they don't diagnose Celiac, but non-Celiac gluten intolerance.

The problem with enterolab, at this point, is that his results haven't been duplicated by others, and his methods are not published.

(All this being said, I certainly think that if anyone does better on the gluten-free diet, regardless of type of testing, results, etc., then I highly encourage it)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,920
    • Most Online (within 30 mins)
      7,748
    MLSpade
    Newest Member
    MLSpade
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.